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Thursday, December 22, 2011

Setbacks and Clanging Bells

This is a tough one. I've very much struggled over the past two days. Of course, to say "struggled" is relative and those of you who know my story know that its been longer than two days. Right now, my "struggle" is nothing compared to what I'm watching Jeff and his parents go through, and even to hint at the idea of a struggle right now seems like a selfish indulgence. That being said, MY struggle IS one of faith and has been for as long as I can remember.

Faith, as described in the dictionary, isn't restricted to religion:

Definition of FAITH
A: allegiance to duty or a person; loyalty. Fidelity to one's promises. Sincerity of intentions.

B: Belief and trust in and loyalty to God, belief in the traditional doctrines of a religion. Firm belief in something for which there is no proof. Complete trust.

C: Something that is believed especially with strong conviction; especially: a system of religious beliefs (the Protestant faith).

As I have mentioned before, my long and arduous journey with faith begins and ends in the church. I'm not new to religion (I've always hated that word), but I've always felt more spiritual than religious. I knew scripture, I prayed fervently, I believed fiercely, and I raised my kids in a "Christian" home. But all that changed in 1998, worsened in 2003, and since then, because I attached what I saw as actions of betrayal by "godly people", I built a very, very thick wall of animosity toward God. To me, they're one and the same. If "godly people" suck, then God sucks too. That's that.

Believe me, I know it sounds infantile and immature. But there really isn't anything you can tell me about Christianity that I don't know. I could write a book. Ten books. Been there, done that. I could count on one hand the number of people who I TRULY believe behave in a way that, if God is watching, would make him proud. One hand. Please don't confuse the issue here. I have a lot of good people in my world. I'm just talking about the ones who profess a belief and live that belief. Most other people I know or am acquainted with who profess their belief, set off my red flag of distrust. They talk the talk. But they don't walk the walk. I guess I'm being judgemental. It is what it is. The second I hear sentences that begin with; "I'm a Christian," or "I'm praying for you," I begin to shut down. I can't hear anything after that.

Charlie reminds me that PEOPLE created the mortar in that thick wall for me. Not God. He's right. For me, those people suck. If one of them says they're praying for me, they might as well stick a knife in my gut for all that's worth to me. Still, even now, I realize that I'm not an atheist because if I was, then who do I have to be mad at? Even more importantly, if I don't direct my anger at God, then there's lots of humans that would be subject to some very nasty wrath at my hands. Charlie, sweet and wise as he is, has always given me the allowance of this anger, however misdirected he thinks it might be. Why? Because for him, God is bigger than that. He doesn't believe that God works the way that humans think God works. For me, there is no one I trust with my faith more than Charlie. For me, no one behaves more in a way God would want someone to behave than he does. Without a church, without a congregation, without banging a bible or spouting scripture, my husband walks the walk. He isn't the "clanging bell" (which to me reads as "hypocrites") spoken of in Corinthians. He is the love.

That's how I feel about the people I now surround myself with. My heart does the speaking and their hearts respond. I do not have time to waste, so much has already been wasted. I do not need religion, but I realize that I DO need faith. I found that faith in the people who are not those clanging bells. They simply do what to them comes very naturally. Their actions speak louder than their words. Sometimes there were no words, they were just there. Sometimes being there didn't mean they were there physically. I felt their presence. Their words were never empty. They did what they said. They have ministered to me in the hardest of times and not a one of them desired any reciprocation or accolade, nor had any of them sat in a church or belonged to any other fellowship than that of humanity. This is my congregation. These friends who loved me for me and accepted the love I had to give whether I was a churchgoer or not. "Perhaps," said Charlie, "this is God for you?" Perhaps. I do not know. But I have found peace in this and I need that peace so that I can pass it on for people who need it more than I do right now.

We have had a bit of a setback with regard to Jeff. They were going to take him back into surgery and close his open incision on Tuesday. Once they did that, he could begin to eat actual food again. Bland and soft, but actual food. He hasn't eaten anything for about two weeks now and he is, quite simply, a skeleton with a skin covering. He is weak, and frail and maybe weighs all of 90 pounds. Any nutrients he is receiving are being administered through a feeding tube. We sat in the surgical waiting room Tuesday night and looked forward to hearing the surgeon say that his incision was successfully closed. That did not happen.

Though the swelling in his colon has decreased substantially, it wasn't enough to pull his skin together without tearing. So they didn't risk it. His surgeon, I discovered that night, has a Gregory House beside manner and though I cannot go into detail for privacy reasons, I know that if this were my son and that guy was talking to me and Charlie, there would be some ass-kicking going on. Which is what brought on this whole topic of faith for me. I digress. The news was a devastating blow and very difficult for his parents to process. I began to realize that they only heard the negatives that came from this man's mouth AND some of what he said they were not processing. These poor people had been through so much for so long and listened to doctor after doctor. It was late, and I know they were exhausted, so I began to relay to them the positives that I heard him say. Optimism. It's all I could offer at the moment. But I know it mattered to them.

My niece Jenny wrote me a great note the other day. Her father is undergoing cancer treatment right now, and so we have been sharing. She said a few things that I thought were important for me to hear and somehow, she was able to get beyond my stubborn wall with this:

Aunty Pua, Thank you for sharing Jeff's story with me. As far as faith goes-I feel I have no other option. All I know of this dreadful disease is that science is only so good. Not all medicines cure all of the disease. Knowing this, I shutter to allow myself to think of the outcome. Then come the mind games playing tricks on me. I know that in this mortal life we are not guaranteed an eternity and I am simply too selfish and not ready to realize the no promises or guarantees offered on as I think of my father's life. My brain knows cancer is not an automatic death sentence but my heart has a lot of difficulty actually believing it.....In order to fill the void I have come to know as "what the experts say" I found myself seeking validation behind the faith I do have....Optimisim is my source of hope. If I don't believe then I have nothing except a hole in my heart. There is plenty of time for a hole in my heart later after mortality smacks me between the eyeballs right now, I need hope.

Optimism is my source of hope. I took that to heart. Jess and Marc reminded me that we are all judging Jeff's life by our standards. That's not for us to do. Just as I felt this doctor's cold, scientific realities don't speak to one very important thing; Jeff's faith. I looked into his mom's tired, worried face after the surgeon left the room and said to her; "Sharon, remember what Jeff told us he saw?" She nodded. "Well, that doctor doesn't know what Jeff knows. Not only that, we know Jeff. Don't we?" She smiled. "Let's hold on to that. Okay?" She nodded again.

Despite what that doctor said, it's two days later and Jeff is still here. Yesterday, my small way of sticking my tongue out at Dr. Negative's prognosis is that I bought and decorated a small Christmas tree and took it to Jeff. His mom put it on his bedside table-tray and Jeff smiled when he saw it. I called his mom this morning to check on him and she said that tree gave him so much joy. He loved looking at it. That, and he's looking good today, they're moving him out of CCU. So there, Dr. So-and-So. Take that.

Ikaika means "strong" in Hawaiian. I've been calling him that lately. He likes it. He pumps his fist when I say it. Whenever I leave him and say goodbye; I say "Tiny steps, Ikaika. Tiny steps." He never stops smiling.